How one diagnosis is helping change the lives of thousands affected by Nephrotic Syndrome

A budding business in West Haven, Connecticut is creating candles for a cause. Jordan Crooms and Jennifer Lowe started A Little Soy Candle Company in March 2018, but there’s more than just wax and wicks consuming their lives.

Before they became entrepreneurs, the couple was focused primarily on raising their child. In October 2015, their daughter Tatum was born. Just before her second birthday, Crooms and Lowe started noticing their once healthy baby girl now appeared more swollen than before.

“We thought we were feeding her too much. At one point we asked, ‘Are we giving her too much juice?’” Crooms said.

After several misdiagnoses, Tatum was correctly diagnosed with Nephrotic Syndrome in August 2017.

“Your job as a parent is to do everything you can for your child, but there was nothing at that time that we could have done, and it was just defeating,” Crooms recalled.

Initially Tatum was given steroids, but after several relapses she was put on CellCept (Mycophenolate Mofetil MMF). One thing both Tatum’s parents and doctors think contribute to her Nephrotic Syndrome, and relapses, is her sensitive skin.

After Tatum’s diagnoses, Crooms and Lowe ripped through their home throwing away anything containing harsh chemicals. They swapped cleaning supplies for vinegar, and traditional paraffin wax candles for soy ones.

“I did some research and noticed that they [traditional candles] are basically made from oil-refining by-products,” Crooms said.

That didn’t sit well with them, and it’s ultimately what ushered the two to start their own soy candle company.

Selling the candles to family members at first, the couple was able to branch out and grow business within months. They welcomed this unique opportunity to inform people about Nephrotic Syndrome, all while raising money.

“Our core mission is to not only sell candles, but to work with NephCure and help support in any way that we can,” Crooms said.

A Little Soy Candle Company is committed to finding a cure for all who suffer from Nephrotic Syndrome. They are donating 20% of their profits to NephCure Kidney International, but their vision by 2030 is to be able to give 80% of profits to help find a cure.

“It’s a very bold mission, but I think we can do it,” Crooms conveyed.

This year alone, the company has made nearly $7,000 in sales and is set to donate roughly $1,000 to NephCure.

Since starting the candle company, Crooms and Lowe began to realize just how many people were affected by Nephrotic Syndrome in their area alone. They’ve connected with other families through candle sales and hope to build a community together.

Hand delivering locally has allowed the couple to meet customers face-to-face and share the details of Nephrotic Syndrome.

“When we deliver, it’s crazy because most of the people come out and say, ‘Our son has Nephrotic Syndrome.’ There’s just so many people,” Lowe explained.

A Little Soy Candle Company has their products in several retail spaces in Connecticut, as well as a boutique in Missouri.

“Our long-term goal is to really make this not just about candles, but a vehicle for people to help NephCure, help the families, and really just build a community around it,” Crooms said.

For more information about A Little Soy Candle Company, or to place orders, head to their website or Facebook page.

Road to Rituximab: Matthew Englefield’s New Treatment Experience

Matthew Englefield has been living with Nephrotic Syndrome—Minimal Change Disease for the past 6 years. He maintains a page on Facebook to help offer support to other children and adults who live with this condition, called Matthew and Nephrotic Syndrome. We asked Matthew if he could share his experience of trying Rituximab as a treatment option for his Nephrotic Syndrome. A recent study has shown that Rituximab is more effective than Tacrolimus in maintaining disease remission and may be considered as first-line corticosteroid-sparing therapy for children with steroid-dependent Nephrotic Syndrome.

Hello, my name is Matthew Englefield. I am 18 years old, and I live in England, UK. I was diagnosed with Nephrotic Syndrome in 2012 and have been on various medications since then. These varied from trying long-term steroid treatment, levamisole, tacrolimus, MMF (cellcept) and a very hard choice—Rituximab. I had a kidney biopsy back in November 2017 to see what long-term effects tacrolimus had on my kidneys. It was then that I was told I have a form of Nephrotic Syndrome called Minimal Change Disease (MCD).

At the start of 2018, I met with my consultant to discuss the next potential form of treatment: Rituximab. This is a newer form of treatment that’s been used to treat Nephrotic Syndrome for roughly the past 10 years. I was very scared and drastically worried about trying out the medication, but I had one last option to try before Rituximab. That was to go onto MMF (cellcept) to see if it could maintain my remission. Sadly, after being on it for a month, it didn’t work. I was spiraling into another relapse, with protein present within my urine. I was left with no other choice but to go ahead with Rituximab.

At this point I was petrified. I didn’t know what to do as there were no other forms of medication to try. Learning about the side effects of Rituximab left me feeling shocked. It was a very big risk I had to take—in fact, everything has been a risk since being diagnosed with Nephrotic Syndrome. I decided to go ahead with the treatment because I was hoping and believing that Rituximab could make me medication-free and maintain remission. I had to be in remission for a good couple of months to be able to get the treatment, otherwise I was at risk for something to go wrong during the procedure.

For support during this tough time, I reached out to a family in Canada who I have become friends with over social media and asked them more about my last option of treatment. Their son Brock had recently gone through Rituximab. I was able to learn more about his experience and ask him questions about the procedure. This reassured me that I had made a positive decision in choosing my last form of treatment to help maintain remission.

I was given a date for my Rituximab infusion in August, but I was not looking forward to it at all. I was very worried about trying the new form of treatment and I was constantly questioning myself, “What if the procedure went wrong?” or “What if I had any allergic reactions while having the treatment?” I had spoken to a lot of people who have Nephrotic Syndrome and I was asking them for advice either personally or on my Facebook page (which is dedicated to help parents and individuals who suffer from Nephrotic Syndrome).

Finally, the day came to have my treatment. I got into the hospital, had my cannula (IV) inserted into a vein and had to wait until midday before I could have the infusion. I was not allowed to eat anything in the morning, but I could have fluids. If the procedure went well, it would take around 4-6 hours. At that point, all I could do was pray that it would. Before the Rituximab infusion, I had to have an antihistamine infusion to prevent any reactions taking place. Finally, after waiting a very long time the infusion began! I fell asleep during the infusion, as I was exhausted from waking up early in the morning, in addition to receiving the medication.

I began to feel very hot and had developed a sore throat at the start of the infusion. This quickly vanished as the procedure carried on. Even during the infusion, I was quite worried that it would go wrong. If I had a reaction, the infusion would have to stop. Luckily, this didn’t happen and after every hour they increased the flow rate of the medication, which made the duration quicker. I was able to do things while the infusion was taking place, including using the restroom and have a walk around. I was very glad I could do this, because sitting down for a long length of time can be very boring! The nurses were very kind and made sure I was entertained so that I could have some form of distraction to make the time go quicker.

After four very long hours I was glad to see that the infusion had come to an end! I had to wait an extra hour after it had finished to make sure I didn’t have any reactions or sudden side effects after the infusion had taken place. After a couple of days of having Rituximab, I lost a lot of energy. I found myself falling asleep a lot, which made me feel like an elderly man dozing off in the chair! But, after a couple of weeks of continuously falling asleep at very strange times during the day, I started to feel better.

Sophie, a friend of mine, was also going through the same process I had been through and was waiting for her Rituximab treatment. She was finding it a very distressing time, just like me and was contemplating whether she had made the right choice of treatment. As I had gone through the treatment before her, she asked me a lot of questions about my experience with Rituximab and what happened during the procedure. It felt great that I was able to help and reassure Sophie, who also suffers from Nephrotic Syndrome, while she was waiting for her date for her Rituximab infusion.

Rituximab can be a very scary experience, and I had second thoughts of having the treatment. But at the end of the day, I am glad I took the risk of going ahead with Rituximab for the hope of long-term remission.

It has been three months since I had my Rituximab infusion, and I do not feel as tired as I once did. I am able to maintain daily tasks that we all have to tackle within our lives. I feel great! I have gone back to Judo, which I had to stop when waiting for my biopsy, and can now do more physical activity than I could previously. I am now waiting for my appointment with my consultant which is coming up within the next few weeks, and because I have been in remission ever since having Rituximab, I am hoping to be taken off steroids (prednisolone). I’ve been on steroids for over a year and once I get off them I will be fully medication free—something I have not been since my diagnosis back in 2012.

I want to thank you all for reading my story and experience with Rituximab. I hope my story eases your anxiety towards trying Rituximab, for the hope of maintaining remission.

Organizational Mission

NephCure Kidney International ® is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome, improve treatment and find a cure.